Says Who??

Verstehen, through shared perspectives


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RESPONSE TO DR. JEFFREY FUDIN’S REQUEST

In Dr. Fudin’s post today, comPASSION Fatigue https://t.co/rilJGgQxFG , he defines Compassion Fatigue as “essentially a form of burnout common to those of us who actually care.” He and his co-author explain the problems of advocating for good care for chronic pain patients while navigating the endless stream of misinformation, outright lies, overreaching legislation and its advocates, and the inability to understand the differences between the illnesses of substance addiction, and the suffering of chronic pain patients. “[W]e continue as a society unable to hold two thoughts in our heads, the suffering of the addict now that rules the day and the suffering of the pain patient has been relegated to a bottom dweller,” the article states.

Since most fail to listen to anyone they do not agree with, and no one seems to care about truth in advertising, chronic pain advocates and their physicians (and pharmacists) grow disillusioned and weary of the task. I urge the reader to use the link above to read this very relevant article, where the authors make a much more articulate argument for the case than I have made here, as well as reporting important new information.

However, it is not my intention to simply report on the article or its excellence. The authors realistically ask a very relevant question: Is anyone out there still playing the game? Are we still actively advocating for chronic pain patients? My answer is difficult to write.

Having been an undertreated chronic pain patient for well over 40 years, as well as a nurse in a county jail who worked with police, substance abuse addicts, and drug dealers, I believe my claim to a broad understanding of the situation to be credible. I am also well trained in both statistical and qualitative research as a result of my graduate degrees. Yet I am repeatedly called out as ignorant, as a probable drug seeker, or as simply being wrong about everything. I do have pretty thick skin, having been an academic dean for several years, and while friends compliment me on my ability to persevere, my parents called it “stubbornness.” But so far, it has served me well.

Again, I hate to quit, or to give up on a good cause. But at my age I have learned to pick my battles. I have only so much energy, thanks to my years of pain and the many disease processes that have resulted from that pain.

At the same time, that last sentence explains exactly why I have chosen THIS battle, and I will not give up or shut up. You may not see me in writing as often, because I am tired and ill much of the time. But I will write, and I will talk, and I am definitely still in the game—just benched to rest a little more often. I am far from being alone in this situation, and I no more want to see hundreds of thousands of others suffer than I wish to suffer myself.

Meanwhile, here is a thanks to Dr. Jeff, and to all the compassionate pain management physicians (especially mineJ) who stay in the game despite all the prejudice, dishonesty and even the honest ignorance and misunderstanding that muddies the waters and stains our souls. Then too, the devastation of the lives ruined and lost unnecessarily because of undertreated or ignored pain, and the new rhetoric that is based on the notion that we are all alike and our pain should be treated the same, accordingly. And let us not forget to acknowledge those compassionate physicians who have lost so much after being targeted and charged by federal agents with no accountability for their actions when they were wrong.

I am beginning to ramble, so I end with this statement: The pain of burnout and the pain of disability cannot end this battle. It is too easy already for many to forget or deny the reality of our existence. Our voices must continue to compel the truth into being.

Talmud quote


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THE SHAME OF A NATION: PERSECUTION OF PAIN PATIENTS AND THEIR PHYSICIANS

Lawmakers now claim that drug abuse and overdoses are caused by those who suffer pain and seek medical assistance to alleviate their pain enough for them to cope; to be able to participate in life! How patently absurd. [i]

Before I go on, know that NOTHING in my writing is geared toward promoting the free use of drugs. I firmly believe that second only to the persecution of innocent pain patients and physicians, the great shame of our nation is recreational drug abuse in all its forms, by whoever indulges in it. I have watched too many beautiful and bright college students and other young people destroy their lives in this way. Not just with pills, but also with alcohol, glue sniffing, paint inhaling, and smoking marijuana.

But I have to ask: Why have the law makers and enforcers turned against people who need medication for pain? The problem is not people who rightfully believe medication is intended to cure or alleviate medical conditions. The problem is people who either co-opt others to drug use, or who choose to use drugs themselves.

People choose to be responsible, or not. The medication is not to blame.

But now we are persecuting innocents, with a somewhat hysterical belief that they are somehow the cause. [ii] I submit a brief and incomplete list of resources below showing how the lives of good people are being destroyed by this 21st century witch hunt: Dr. Baldi, Dr. Salerian, Dr. Ibsen, and others[iii]. Also, articles referring to a host of pain patients who, failing to receive the pain care that is their right, submit to the fear of a life of unbearable pain and commit suicide. Or, they go to the streets for drugs. Who can blame the latter?

Their pain has already been criminalized by their own government.

This misdirected war has had unexpected consequences that are well documented. The efforts to restrict physicians and pharmacists[iv] from providing pain medications to patients has immediately resulted in an increase in heroin use, with a rise in overdoses and deaths. The response from law enforcement? “These are UNINTENDED CONSEQUENCES[v]. “ It seems that in law enforcement it is OK to produce unintended consequences that stem directly from uninformed and under-researched legal action, killing innocent people and increasing the presence of street drugs.

When will we be smart enough to open an honest discussion between lawmakers, enforcers, and professionals who actually care about their patients?

When will pharmaceutical companies get concerned enough to research and market pain relievers that are potent enough to control pain, without dangerous side effects?

When will we all shake off our apathetic yet determined slide into the shame of our national mediocrity and the injustice and corruption in our system that accompanies it?

A South African woman once remarked to me that human beings are the most intelligent animals created by God; we are smart enough to create the means by which we can destroy the world – and stupid enough to use them.

           

[i]   Lynn Webster, MD: Lawmakers blame people who want pain controlled as the cause of RX abuse. http://www.tricities.com/workittricities/learn/article_3f71bb90-bad0-11e4-b4c7-9bf785dd481e.html?mode=story …

[ii] Lynn Webster http://www.orlandosentinel.com/opinion/os-ed-pain-drugs-021915-20150218-story.html  Terminal cancer patients are treated as drug addicts   “At each appointment I get scared my doctor will no longer prescribe” http://t.co/yYvcGWI4Uc War on Drugs victimizes pain pts http://updates.pain-topics.org/2012/06/how-war-on-rx-drugs-victimizes-pain.html   :  New restrictions hit veterans hard  http://t.co/r23KAbUIIm

[iii] These are but a few references: Dr. Mark Ibsen   http://t.co/BrZUXfUV3d or http://t.co/6midSDOLOQ ; Dr Salerian: Dennis Lee, the voice, PhiliP KEENE, New York Times Washington Post war on doctors http://fb.me/3zYOQM18d Trial Verdict: Dr. Baldi Not Guilty on All Charges http://whotv.com/2014/05/01/baldi-trial-not-guilty-on-all-charges/    Dr. Gary Shearer: Suspended Northern Kentucky pain doctor dies of ‘suspected suicide’       http://www.wcpo.com/news/local-news/boone-county/florence/dr-gary-shearer-suspended-northern-kentucky-pain-doctor-dies-of-suspected-suicide  The damage done by the war on opioids: the pendulum has swung too far http://www.dovepress.com/articles.php?article_id=16781 …   Local dr indicted   http://t.co/kYxwB0aGmH

[iv] http://t.co/jtJHRGkN1o   DEA responds after patients denied prescriptions

[v]

Experts: Officials missed signs of prescription drug crackdown’s effect on heroin use (Posted 2014-03-07 02:40:30)
Success in shuttering “pill mills” led to rising heroin use, and officials say the government missed warning signs.
The Washington Post – Washington, D.C.
Subjects: Heroin; Prescription drugs
Author: Markon, Jerry; Crites, Alice
Date: Mar 7, 2014
Start Page: n/a
Section: NATIONAL-POLITICS
The center, which closed in 2012, was separate from the unit employing prosecutors and agents who fight drug use. […]these officials defended their fight against prescription drug abuse, saying those efforts prevented numerous overdose deaths.


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PERSPECTIVES ON PAIN CARE PROVIDERS DAY

As I write this post, the date is February 1st. When I noted the date this morning, my reaction was “Finally! February is here. What a relief!” I surprised myself. The first 28 years of my life were spent in western New York State, so I can assure you that this is not my normal reaction to the first day of February – or any other day in February, for that matter. February was always the month when Seasonal Affective Disorder (SAD) reached its peak: Gray days, dirty gray snow, cold days and colder nights, chapped skin, shoveling snow day after day – by the second month of the year the reality of winter was enough to send me into at least a minor depression.

…Until recently. Chronic pain has for years held an even greater power in my life for bringing on depression, especially after a few long months of winter weather. However, once I had become convinced that my thought patterns and beliefs could actually make my pain even worse, I decided to try an experiment. Last year, I decided that instead of suffering through the blues of February – or grays, if you prefer – I would welcome the month as a certain sign that we were on the downside of winter, and better days were ahead.

That was actually true for me in several ways last year. I did concentrate on thinking positive thoughts about February, which was no small achievement. I also met my pain management physician that month, and had two epidural procedures which alleviated my pain enough to allow me to manage several other medical problems over the following months. I didn’t think any more about my experiment until this morning, when I surprised myself by welcoming the thought of February. My perspective has certainly changed.

All this soon led me to thoughts of chronic pain, and the Pain Care Providers Day campaign. I thought how over this past year I have watched and read about chronic pain patients who have joined their voices and efforts to bringing about national awareness of the hundreds of thousands of people who exist with daily, even constant, severe chronic pain. I thought of those professionals and clinical personnel who have joined to champion the cause of those people that they care for, day in and day out. And I remembered the families, and friends, and neighbors who join in to assist people who cannot always manage on their own, and who have also supported this campaign.

As I looked back over the year, I realized that attitudes are changing. Perspectives are changing. Many people who have been victimized by both their own bodies and by unreasonable laws and regulations regarding their care have refused to be labeled victims. They have found their voices, and are speaking out, demanding to be heard and treated fairly. And they are being supported by the voices and efforts of their caretakers.

Physicians are pushing pharmaceutical companies to produce medication that will not harm their patients. Medical societies are pushing for multidisciplinary approaches to treatment for chronic pain patients that will be more effective. During the month of September 2014 we celebrated Pain Awareness Month, and more people joined the efforts to bring new resources to the treatment of chronic pain.

So now, on March 20th, 2015, we will celebrate Pain Care Providers Day (PCPD).

What is this day all about?

It is definitely NOT about drugs. It’s not even about chronic pain patients, per se. It is about celebrating the steadfast and selfless gift of presence and help by all those who have cared for us all these years when we have generally been thought of as malingerers, hypochondriacs, drug seekers, or worse.

Admittedly, we chronic pain patients are not always easy to deal with. Sometimes it is difficult to discover what has caused our pain. Sometimes we are cranky, angry, depressed, uncooperative, or downright mean. Sometimes we are hopelessly fatalistic. Sometimes we are suicidal, because the pain and isolation is winning out over any potential for loving life. Yet our caretakers and providers are still there.

But there is hope—which for many of us, is an entirely new perspective.   Awareness is happening throughout the nation, thanks to the campaigns, and more changes of perspective are taking place in unique places. Some people are actually changing their opinions about pain care providers and their patients. Of course, it takes longer for government agencies to adjust their perspectives, but with all our voices together, we can and will be heard. And those who have cared for us will still be right there, working alongside of us. And on March 20th, the first day of Spring—a day of hope—we want to celebrate their presence and work in our lives, and what it has meant for us.

 For our pain care providers, and for those who will join their ranks in future generations, I offer the following statement in support of these achievements, and these changes in perspective. It was written by Henri J. M. Nouwen, and I have borrowed it from his delightful book Bread for the Journey:

 Joy is hidden in compassion. The word compassion literally means “to suffer with.” It seems quite unlikely that suffering with another person would bring joy. Yet being with a person in pain, offering simple presence to someone in despair, sharing with a friend times of confusion and uncertainty…such experiences can bring us deep joy. Not happiness, not excitement, not great satisfaction, but the quiet joy of being there for someone else and living in deep solidarity with our brothers and sisters in this human family. Often this is a solidarity in weakness, in brokenness, in woundedness, but it leads us to the center of joy, which is sharing our humanity with others.

 

Please join us in celebrating Pain Care Providers Day on March 20th. Tell your friends and neighbors, and encourage leaders to proclaim the day. It is our day to share our humanity with others. It can be a day of joy.

justinhighrock